Usually, when you lose feeling or your body creates a wrong sensation, it is normally localised, as in, you can isolate it to a nerve group. Those sort of changes, in my world, are normal, and that’s what has been eating away at me, this wide body madness just doesn’t make sense. How and why, do I have so many isolated, but simultaneous sensations outbreaks? How can two fingers on one hand, a patch the size of an orange on the other, and a six by eight-inch patch on my thigh, totally dead, at the same time? Surely there are no connections, or is there? Of course, there is, and it appeared like a flash of light when I was talking to Adam last night, not my body, but my brain. I have known from day one when I was first told that I probably had MS, that my brain scans were a mess. The MRI carried out by the ENT specialist to see if he could find a reason for my dizziness, didn’t show up what he expected, but it showed up a brain in a total mess. I had more lesions than most people do, even after years of living with MS and they were widespread across the surface of my brain. I remember speaking to one of the doctors when I was an inpatient, having all the other tests done to be sure it was MS, about what my scan meant. He told me at the time, that I was coping surprisingly well, considering, the number of lesions I had on my brain. In his opinion, I should have been having far more issues than I was, which was a good thing, as my brain was clearly working well on rerouting. Anyway I digress, my MS clearly takes great pleasure on working on my brain, rather than my spin or any of the other places that lesions appear, although, they weren’t totally free of damage. My brain, was it’s main and chosen target. If the lesions have been spreading in the receptor section of my brain, then it makes perfect sense. It’s not damage to a million different parts of me, just to a few important parts of my brain. A lot of people forget, that our skin, is actually the biggest producers of sensations we have. How else would we know if it were windy, or we were too close to the fire? If the receptors are miss reading the true sensation, lets say, of something as simple as my clothes touching it, well the options are endless.

When I realised that, oddly, a lot of the worry sort of fell of my shoulders. I know that it isn’t any better news, and it’s only a theory, but it’s one that doesn’t just make sense, it’s the one I prefer. I often find that making sense of something is cathartic, I went from tied up in knots, without out having the slightest idea where to start untying them, to being able to relax, truly. Yesterday, was a day of putting myself through a personal hell. I kept prodding at different parts of me, not just with a finger, but with all kinds of different things, from sharp to as soft as I could find, trying to stimulate my skin and body to react. I was desperately trying to track them, to make patterns that matched with the different nerve clusters. I found I could trigger all sort of sensations, from cotton wool, just gently brushing me causing a response of fire, to sharp points, not feeling sharp, but dull, dead and retained way beyond the time I was actually doing anything. All I was doing was proving what I already knew, and I wasn’t discovering a single thing that helped me make sense of anything. It doesn’t take a genius to work out that I was terrified that I might actually lose my right hand, just as I lost my left 8 years ago, also oddly, that started to go wrong, at just this time of year. The first signs, I had of that, was when we were decorating the house with Christmas decorations, I kept dropping things. Not in the normal MS way, but I was finding that my hand just couldn’t deal with the weight of things. My wrist would collapse, my hand would suddenly just hang for a few seconds and then be fine. The first week of January and it was totally dead. No reflexes, no feeling, no movement, just nothing, a dead lump of useless flesh around an equally apparently useless bone. It stayed that way for nearly a year, then slowly returned, not fully, even to today it is still weaker than it should be, but useable. Of course, I was worried, finding deadness in so many different places, terrified me.

So far, I have lost no strength and no usage of any part of me at all. It’s purely the sensations. Somehow, most to the things that I feel, that doesn’t exist, I don’t just feel, it’s as though they have had a volume boost, set to extreme. One of the common ones is on my back, I keep feeling cold, not just like a draft, but like ice being on my skin, and it just keeps getting colder and colder. It starts in my spin and normally heads across the left side of my back. It doesn’t seem to matter what the sensation is, it always starts small, and spreads. For the last week, I don’t think I have had a single minute where there isn’t some wrong sensation somewhere. Equally boosted, are the small spasms that I have had for years. They used to be just this annoying feeling of a tight area, not tight enough to cause pain, just tight enough to let me know the muscle had constricted. Some of them, have suddenly started to produce a needle stick sensation. Almost as though they are shouting at me, “hey, I’m here!”. I am totally fed up, reacting to itches, tickles, pins and needles and so on, I would give anything, just to not feel. But the concept that it is the receptors in my brain, that have gone wrong, rather than my entire body, well that makes it somehow, that bit more bearable. Having said all that, I have two areas, that the sensation disappeared from a couple of months ago and has never recovered. I lost three of my toes on my left foot first, followed a couple of weeks later, by the same three on my right foot. I can now feel nothing from either set. Even though I am reasonably sure about the recepters being at fault for the majority of odd sensations, I don’t believe, they have anything to do with my feet, and I’m not totally convinced yet, that they are behind my right hand. It is quite happily coming and going, never totally right and spending more time dead, than alive. Equally, unlike all the other patches and area’s, the lose of feeling in my thumb and index finger, the size of the area never changes and so far, it hasn’t spread. I would be happy to put the blame down to my receptors, but for one reason, there are no changes in sensation. It is constantly lose of sensation, no burning, pins and needles, nothing other than lose of everything.

I spent a large part of yesterday reorganising how I do everything I do online. I have tweaked, changed, reordered and reorganised because, I have to have more time, less pressure, more space to do other things like relax. Living with PRMS isn’t a picnic, it plays tricks with you all the time, right now, I feel as though I am losing the game and that alone isn’t a nice feeling. I don’t know, no one does, what is ahead of me. If my changes will have the desired effect, as I no longer really know what is going on. I’ve never had to deal with something like this before. In some ways, that terrifying, in others, it feels as though I am heading into some kind of adventure. There is no point me sitting here fretting about it, as if there is one thing that I have learned and that is, PRMS does whatever it wants. At best, I can tinker at the edges, help to keep it steady or when it’s running wild, search for the brakes. The next month is going to be one of two things, fingers-crossed, it will turn out to be the better of those two.


Please read my blog from 2 years ago today – 22/12/2013 – Time to let go

This is going to be a day when nothing happens when it is meant to. At the minute, the hall floor is covered in the shopping delivered by Asda about an hour ago, the rest of the house…..






Condition blinkers

I love it when you find something good, almost by accident. Lately, I have been having a lot of neck and shoulder pain, it doesn’t take a doctor to work out why, just as I’m sure you too know the culprit, my wheelchair. I have been doing all the standard things, massage, relaxation, warmth but nothing seemed to be making much of a difference. Just over a week ago, I went for my afternoon nap and settled into bed as I always do. Lie down, obviously, get comfortable, which for me, has to be on my back, but it still takes positioning. I know, surely flat on your back, is flat on your back, I used to think so too, but, it still takes the normal shuffling, for true comfort. Then the last two acts are probably different to anyone else. With my arms either side of me, I reach with my fingertips as though I am trying to reach the bottom of the bed. Doing so, means that I am forcing my shoulder down, so it’s impossible for them to tense, a simple, but effective trick. If you have never tried relaxation techniques, or thought them airy-fairy, or even tried and failed, I can honestly say that I’ve been through each of those steps, and eventually, I became a convert about 5 or 6 years ago. If you are a doubter, skip the next paragraph, unless you’re ready to open your mind just a little bit. The final thing I do is to run through my relaxation process, simple and effective to let me slip into sleep. On this particular day, sleep didn’t come, sometimes it doesn’t, so I lie there for an hour, just running around my body in my mind, relaxing each part over and over until the alarm sounds.

My neck had been really sore that day, so as I couldn’t sleep, I worked again and again on my neck, especially, at either end of it and right around it as well right up to my jaw. The best description I can think of is to say, that I was trying to relax it right down to cell level. Even though I was as sure as I could be, that there wasn’t any tension left, as I had long since passed that point where my neck felt as though it had vanished. I was lying there totally motionless, when I honestly felt something change in my neck, not so much a physical click, but more like a muscle I didn’t know was even there, suddenly let go, and it cascaded. I know better than anyone, that this next line sounds stupid, but it is exactly what happened. It felt as though, a hole had appeared exactly where the sudden change was. It slowly grew, spreading up to the base of my skull and down to the top of my spine. For the rest of the day, I neck didn’t hurt at all, but I was so intrigued, that I tried to repeat it again that night, but it just didn’t happen. Two days later, the pain was back and when I went for my nap, I decided not to let myself sleep. I repeated the whole thing and once again, eventually the same thing happened and the pain vanished for nearly the whole day. That time I wasn’t so lucky in the result, but I had come up with a plan. I have been working on my neck every afternoon and every night before I sleep. Not for the whole hour, as I now know where that “click” point is. I do have to be really relaxed to before I start on it, but as long as I am, I always feel a change. Since I started, I haven’t had any pain bad enough to complain about, and if I do feel anything, even when sitting here, I can improve it. I think what is happening is actually quite simple. I believe, that there is a nerve that is being caught by the tensed up muscle, not near the surface but deeper in my neck than my normal sleep relaxation process goes. With everything as relaxed as I can possibly make it, it is simply released and the pain is gone. Not rocket science, or anything to do with my PRMS or any other condition, other than normal everyday muscle tension, but it’s so worth doing. Hippy-dippy mumbo jumbo finished.

It is actually one of the easiest things to fall into without even meaning to, that everything that is happening in our bodies has something to do with a “condition”. Once you have a diagnosis, or especially, a collection of them, we are very inclined to sit here and try and make it fit, to something a doctor has told us we already have. I used to be so guilty of it, I simply couldn’t have an ache or pain, or something odd happens that wasn’t to do with either my PRMS or Fibro. I even found myself sitting scouring all the different sites, actually hoping that my “new” symptom, would be listed somewhere. It was almost as though someone had suddenly fitted me with a pair of blinkers that I just couldn’t see past. Stupidly, when I got over that phase, I went totally the other direction for even longer. I will actually take a little of the blame of myself, in both cases. For someone who is diagnosed today, there is a wealth of detailed information on almost everything other than the rarest of conditions. When I was diagnosed, nearly 15 years ago now, the internet was still very much a baby and doctors, well they didn’t like anyone putting anything online about health at all. Back them, even companies, like the Mayo Clinic, put up nothing about conditions. What was there, was sparse, mainly put up by people who not only had the condition but were amateur web designers as well. No, you couldn’t just set up a blog, or open a Facebook page, they didn’t exist. There were some fledgling site in the USA, but back then and even today to some extent, the information country by country changes. Having discovered that fact, well, the “new” symptom, might not be recognised here, but what about elsewhere? Eventually, I got fed-up with never finding what I wanted to and I stopped looking. Over the years of not looking, the information improved, suddenly things like nausea were a symptom of MS, according to medical sites in the USA, on some in the UK and definitely not in other places. Trust me, it gets confusing.

You would think that a condition is a condition, that the symptoms that make it up would be recognised and set in stone worldwide, but they’re not. From what I can make out, it doesn’t end at the web, it is just the same story with our doctors, they have just as many varied opinions. As patients, we don’t stand a chance of knowing if we are new ill, normal ill, or iller. If the so-called professionals can’t make up their minds, we are never going to stand a chance of assigning anything correctly. As a rule of thumb, I have come to the conclusion, that it is best to assume, it is something totally new, as I did with all the issues I had with my intestine. So OK, it did land up as I feared, being down to my PRMS, but if I hadn’t been sent to see the Gastrologist, I wouldn’t have eventually been given the right solution to managing it. I very much doubt if I had insisted in seeing my Neuro, that that would have been the outcome.

There is, of course, one other factor when it comes to knowing where our “new” symptom belongs and what is wrong with us, ourselves. I know I have done it once, but I can see that there is a potential for it to happen to all of us. Once your chronic illness is fed up of living alone, it invites its chums along for the ride, and we, eventually, stop caring. A new pain appears, you’re more tired, so what! It’s an easy one to fall into and totally understandable. Putting everything down to current conditions isn’t sensible. For me, it was a case that I was passing out or feeling as though I was about to. I put up with it for years, even after I managed to knock myself unconscious. Dizziness is clearly part of my PRMS, but this was slightly different, as I can feel the blood draining. If I lift my arms when I feel bad, I will pass out. In PRMS, you don’t pass out, just fall over due to lack of balance. I gained another condition they can do nothing about, Vasovagal. They can’t treat it, but there are drugs and situations I need to avoid. Life got easier with an answer. If I hadn’t seen the doctor, I might have been unconscious more often, but now I know. Years have passed and I could with easy now ignore symptoms, simply because it’s too much of a bother to do anything about it. I know, that that has to be avoided.

Our health issues don’t have a start date or an end date, we can get worse with the conditions we have, or possibly better. New ones can appear and often there is a simple answer, even if we think it’s an odd answer, it’s worth trying. It doesn’t matter if you can find it on the internet or not, if our doctor recognises it or not, if it’s there, there is probably an answer. We don’t need to be told, that cures are rarer than most people think, but we don’t have to suffer either. I was the biggest sceptic when it came to anything that didn’t look like a tablet, now I do relaxation daily and it helps me. If there is one thing that I know for sure, if we try to ignore it, it normally get’s worse. On which note, yes, I am talking to myself, I know that my hands are getting worse and I know that the day that I need to pick up the phone and ask for help is getting closer. Yes, I did try relaxation, it didn’t work, well it did when I wasn’t useing them, but the second I did, it was all undone. I know I have been putting it down to my HMS, but is it? They couldn’t do anything about it years ago, is the answer still the same? According to the web, yes, but who knows. Ultimately, no matter what, our health is in our hands and if I do nothing, nothing my hands won’t improve.


Please read my blog from 2 years ago today – 01/12/2013 – Accepting it’s happening

Nothing to do with my MS I know but I have a really sore shoulder and arm this morning, whatever happens to me it always seems to be my left side that it happens to. Injury or…..

It’s possible: Wrong or right?

I received one of those automated phone calls a couple of days ago. You know, the ones, with this semi-automated voices, that spurts out instructions, for you type into the keypad. I knew I had a hospital appointment this month, but I thought, that it was at the end of the month. It turns out, that I was wrong. My appointment is on Monday morning at 10:45, not the perfect time, but hopefully, it won’t work out too badly. When the phone rang and I heard that voice, I have to admit, my heart sank. I fully understand why organisations and companies use them. As an ex-operations manager, I could have seen me selling it to the company as a great way to save money. That doesn’t mean, I have to like them. I have to admit, that the first time I received one from the hospital, that I was more than just a little surprised. When you think of the range of patients; from children through to elderly; including a wide range of disabilities; and mental issues, it surprised me. Instead of saving work for the admin staff, I can see how it could very easily, actually cause more work, especially, from those who didn’t even know that the hospital might call to give them a reminder, in the first place. I can imagine, quite easily, a large number of confused and even distressed people calling back, thinking that their appointments were being either changed or worse still, canceled. When people are either confused or distressed, they take time to handle, to calm down and then to explain to, the purpose of the call. I know this very personally, and so does Adam, as I am no exception to that rule.

I decided last night, that as my appointment is now a lot closer than I expected, that I had best do a few more tests with my oxygen saturation meter. I mentioned a few days ago that my levels appeared to have dropped overall, but I was actually feeling better. Well, I am still feeling fine; most of the time, hence; my not racing to keep checking it; there was one test that I wanted to do; in the middle of the night, when I wake to go to the loo. I have often felt really odd at that point in time, but I just kept forgetting to the clip my meter on to my finger and see what was going on. Like most people, at three in the morning, all I want to do, is get back to bed and back to sleep. Last night, I actually remembered. At first, it all seemed fine, it started at 94, and dropped to 91, where it settled, just as it has done for the last couple of weeks. I often sit for a few minutes, past getting a clean reading, waiting just to see if it is steady or fluctuating. For me fluctuating seems to be the norm. It sits steady, then goes up or down a couple, then back to its settled point. I started watching because I have had some really odd results. I have watched it plummet, right down to the low 80’s, stayed there for two breaths small and tight breaths, then just as quickly, it went back up to 93, the then settled point. Last night, it did it again, this time touching 80 before it went back up. I don’t know what made me sit there for a little longer, but I did, and it did it again.

I found it kind of freaky, so I headed off to the loo and then went for a cigarette. I just wanted to sit there for a few minutes and think. I am a strong believer in not either jumping to conclusions or panicking, when there might be a logical explanation. It started me thinking about the problems I had the last time I was at the hospital when they couldn’t get a clean reading to their tests, for capacity and pressure. There was no consistency, something the nurse was expecting, it was just a shame the doctor hadn’t told her, she might not get any, rather than my getting exhausted by constant repeats. My COPD is mainly due to my PRMS, I do have emphysema, but it’s not that bad, on it’s own, I would probably be OK. When I had woken, I had been very aware that the intercostal muscles that had been in spasm, when I went to bed, were still tight when I woke. On top of that, I was also as normal, feeling tightness in my diaphragm. I know that the doctor had said, that inconsistency that the nurse had seen, would be expected with my condition, so could the figures I had just witnessed in my oxygen saturation, be just another form of the same thing? I have to admit, that I don’t know like a doctor does about exactly how lungs work, but I do have a reasonable level of understanding. I fully understand, that spasms, mean less air, on the surface a sudden dip, when I don’t feel any increase in the spasm doesn’t add up. I know, though, that there are small muscles inside our bronchi. If they went into spasm, I wouldn’t feel it, as there are no sensory nerves in there and it would cut my oxygen off dramatically. It would also explain the sensation of not being able to take a full breath, despite there being not a strong enough external crush to explain it.

So, OK, it’s just another of my theories, but without them, I would truly go mad. When you live in a world that is so full of things that are happening to you, and you don’t have a full compliment of medics, sat there waiting to answer your ever question, theories become important. None of us like not knowing what is happening to us. As I have said before, our symptom list is just the start. If I were to sit and just keep a list, of all the odd things that happened to me in a month, I would expect it to contain more words than my blog posts do, for the exact same period of time. Most of them, I just brush away. They aren’t just unimportant, they are totally irrelevant to anything, unless, they keep happening. I defy anyone to have something that keeps happening, not to wonder why, and to want to know, what it actually is. I would also give odds of a thousand to one, on them, being able to find the exact same thing, written up somewhere, book or online. It is one of those things that after years of living with chronic illness, that you eventually accept, theory, is often the only answer you will ever have. I gave up just asking my doctor, they rarely had an answer. I have tried telling them, some of my theories, just to have them tell me “it’s possible”. What kind of an answer is that? “It’s possible”. Tell me I am right, or tell me I am a million miles off but don’t tell me, “It’s possible”.

Theories, even if they are wrong, have a comfort value to them. They become my answer, if no one is going to give me a better one, then my answer will have to do. I personally, prefer them to constantly wondering “why?”, “what?”, or “what now?”. I guess that it is yet another form of self-preservation, as time goes on, I have and am still developing a lot of them. Over the years of reading what others have written, some have recognised the value of theory, others have dismissed it as a waste of time, claiming that facts are the only things that matter. Being a lover of statistics, I would say there is a value in both, as sometimes when you bring them together, what you find is a fuller, more rounded, and more understandable version of the truth. Ultimately, if they help us to make sense of our health, and we keep going back to see our doctors, then they can’t do any harm.

I don’t think there is anything worse than spending your life asking questions about yourself, that never get answered. On that one, I know that I am talking the total truth, as 20 years of trying to get a diagnosis, I have lived with too many unanswered questions. I wrongly thought that my diagnosis would put an end to asking questions, as surely, I had the answer, if only that had been the truth. Every day since that date, my questions have just grown and grown. Once more, it is the system that is working against us. When you can only see your neurologist once a year for about ten minutes, well you can’t go in there with every question you’ve thought of since the last visit. You can only go there with the most important to you, you might well have put aside something important, but that’s a danger we all have to live with. Clearly we can see our GP far more often if we need to, but they aren’t consultants who are trained in MS, their GP’s, family doctors, with a smattering of everything, not specialist doctors. The system pushes us into working things out for ourselves. Yes, right now, I am heading back to see my lung consultant, who I saw two months ago, but I doubt after this, that I will see him for another six months. Two months, six months or a year, it doesn’t matter, the questions keep coming. We have to find the answers for ourselves, there is no one else to do it for us.

Please read my blog from 2 years ago today – 07/11/2013 – Stretching too far

Well guess what happened this morning? Yep the mattress elevator got stuck again! Adam I actually were talking about the way they had attached it to the bed and both of us thought there were a couple of points that……

“I” have become “We”

It was just past 3 am and I knew I was going to have to get up to go to the loo. This was going to be my first middle of the night visit since I had acquired my new transport. As I stood up to put on my dressing gown, I felt a drip running down my leg, followed by another and then another. There was no time for dressing gowns, or to even sit in my chair, as without a doubt that would be the worst thing that I could possibly do. Holding your bladder back is partially possible when standing, sit and I knew that I don’t stand the slightest chance. As fast as I could, I crossed the hall for the bathroom, aware with every step that there was also a drip being left behind me and with each drop my heart was sinking. As I reached the toilet, I had heard Adam waking up, if what was happening wasn’t bad enough, this meant without a doubt that he too would also be aware of it all. This is the second time in just a couple of weeks that I have lost control in the middle of the night. The first I put down to just plain bad luck. It wasn’t the first time ever that it had happened and I was sure that it wasn’t going to be the last, but not so soon. I can go months without even having to think about my bladder, other than the fact that I normally can’t actually empty it. In fact, I had been through that problem just earlier in the day. It doesn’t matter how long you have been ill, or how much your partner loves you and understand, there will always be things that mortify you ever single time that it happens. For me, this is one of them.

Looking back on it, what I did next seems quite odd, but it felt like the right thing to me. Once cleaned up, I went back to the bedroom and got into my wheelchair before heading back across the hallway to the kitchen. I know I could have just stayed on my feet and turned the corner between bathroom and kitchen with ease, but getting off my legs and safely back on my wheels, was top of my list of priorities. As I sat having what was a deeply needed cigarette, I heard Adam cleaning up what I couldn’t, which didn’t make me feel any better. He came into the kitchen to see that I was OK and didn’t say a single thing about what had just happened. What did I do to deserve this man?

We both know and knew this was going to be our future, but that doesn’t change those feeling. Those things that are instinctively sitting there inside us, just waiting to make us feel bad. I know that time is closing in on me, and that that time I had put down as away somewhere in the future and didn’t have to be thought about just yet is slowly arriving. That is one of those horrid things about chronic illness, there are so many of those in future points. When you are first diagnosed you read all the things that are there waiting to happen and dismiss nearly all of as somewhere off there in the distance. Then the first one arrives, it isn’t expected, or acceptable, all you want is to make it go away. At first sight, you mark it up as a one-off, or something that might happen again, but not tomorrow or the next day. It might be closer, but it can’t be here to stay, not yet. On its second appearance, well you still keep kidding yourself, trying to tell yourself that it can’t be that bad, it has to be something you can control. We hide and we hide again, but no matter how much hiding we do, it’s still there and it’s just keeps getting worse. Slowly it chips through one layer at a time, sometimes moving further into our lives, on others we find new and hopefully stronger layers, ones that this time, it surely can’t breakthrough.

It doesn’t matter what the symptoms are, what it does to us and how much of our lives they manage to take over, we still colour all of it with stories that permit us to keep going. It’s part of what others call our strength, it isn’t our strength at all, it’s plain simple lies. If you don’t fully admit the truth, then you can cope with anything. The people each year who receive those glitzy prizes for acting, shouldn’t go to actresses and actors at all, they should be given to us, the chronically ill of the world. I have learnt to put on prize performances without even being aware that I am. It becomes so much part of you, that not doing it, would be probably far harder. Yesterday, I poured out truth after truth. Admitting all the thing that I had hidden from myself because hiding was easier and allowed me to live day to day with the illusion of normality. It wasn’t until I sat and thought about it, that I realised that the only person I had been kidding was myself. Adam was clearly aware of it all, he knew how much he was doing for me each day. He didn’t need to sit down and make a list, as he is living that list. It was only me who was living some kind of fantasy life. Looking back, I have done this over and over again. With each new symptom, I have played this odd game of denial. I say odd because clearly I’m not an idiot, I knew what I was facing, but by denying it was happening right there and right then, meant I could put off dealing with it, just that little bit longer. I always had to clearly deal with the physical aspects, but that didn’t mean I had to deal with the psychological aspect it brought with it.

I guess we all have our wake up days. Whether or not you write a blog or are just in the middle of trying once again, to get past that point in your day that is getting harder and harder to deal with, that wake up call will arrive. They are like blinding lights that steal more and more of our lives each time they appear. Suddenly, you discover that that point that was once in the distance, has actually been crossed and not just by seconds, often by weeks. Bang, you have reached a new level of disabled and that always hurts. It is over 14 years since I made that list of milestones. What I have woken up to in the last couple of days isn’t just how many more I have passed, but how close together so many of them were and how so many of those still ahead of me are. I though milestones had years between them, I was wrong. They once were, but now they seem to be in clumps. Losing your ability to do one task, actually when you look more closely, usually means you lose the ability to do a huge range of things.

A doctor might ask me, “Can you dress yourself?”, but although I would answer “Yes”, what I am doing is hiding. “Yes,” I can dress myself as my clothes have no buttons, no zips, no laces, or hooks and eyes or fastening of any sort. If all of it is loose, made of soft stretchy fabrics and can be pulled over the required part of my body that needs covering. In essences, I told no lies, I just didn’t answer the question that was really being asked. If you think of all the actions that I can’t manage within that one milestone, well you see not just a couple of difficult actions, but a huge range of everyday tasks that I can’t actually do any longer because of one thing, dexterity. Within all that, you find also a clump of skills milestones, all stuck together and hidden by my answer. I know exactly what the doctor would be really asking, but he doesn’t know that I spend my life in pyjamas and dressing gowns. Fashion these days makes it hard for people to know what you are wearing, my clothing has been the same for 6 years, at home or at the hospital and I always get away with it. By answering that one question with a “Yes”, I am also lying to myself, as I can push that milestone away again by simply ignoring the detail. Take that game and spread it out over my entire life and I can appear to myself and others as not that badly affected, when the truth is the opposite.

Once more I find myself looking at my life and wishing someone had sat me down and explained what the truth of a diagnosis with a chronic condition really meant. If someone had just explained that the milestones of any condition actually affects so much more than that tiny bullet point in a list made up by clinicians. Clinical milestones are as pointless in the real world as an ice axe in the Sahara. Illness isn’t just clinical, it’s real lives in a real world, it people who have lives to live and how they manage that can’t be measured by medical milestones. Once the majority of our life is in the hands of others, even if that is to simply set things up so we can manage our day, we can’t even be measured by the ones we create, as there is no longer a measure that matters. Does it matter medically or in any other way that Adam now sets up small bottles of Ginger Beer and Coke so that I can have a constant supply to drink while he is at work? It matters to Adam and I, and yes it does say something about my degree of disability. But what it really says is that I am cared for, that although I can’t cope, we can. I had missed that. That is the big change, not my wheelchair, or my wetting myself, or any of the other things. What matters is that “I” have become “we” and right now at this level, “we” are comfortable with it and need no other help.

Please read my blog from 2 years ago today – 18/09/2013 – Shhh!

The final required signal that winter is on its way, I am now eating porridge in the morning! Somehow getting up to find the house cold there is once again a need to eat something hot and tasty, I’ve never been sure why we all go looking for…..

Three questions

There are few questions that I have ever been scared of or didn’t know how to answer or didn’t want to answer truthfully. Note, I did say few, that means there are some and they are all thanks to my health. The first that comes to mind is one that has had me in a cold sweat more than once in my life, in fact, it’s probably closer to a million times and it’s one I ask myself. “Who on earth are they and what the hell is their name?” I suppose if I were to be picky that is really two questions, but they always come to me, as a one. It feels like it has been all my adult life that I have never been able to remember people. I am not just talking about stupid things like someone I might have met once at some drunken party-ten year earlier. No for me it goes far deeper than that. If I am totally honest I wasn’t that aware of it until I at last in my late 20’s found myself in the world or work, for the first time my world was bigger than coffee mornings and people appeared in huge numbers. It was when I was a DJ that I first knew something was wrong. Names and faces had become a sea of nameless shapes. I found myself hiding behind an excuse that I spoke to thousands of people every week, there was no way I could be expected to know who they were when we met in a shop three weeks later. Inside, deep inside, I knew that was a lie, I was forgetting people I should know.

It wasn’t until many years later and the last company that I worked for that it went way beyond a joke to a stark reality. I worked for them for 13 years and I wasn’t the only person who had worked there for that length of time. But it didn’t matter if they were new or had been there since birth, the chance of me remembering anything about them when face to face, was practically zero. Even to the day that I was last in the office, there were many people who I might know somewhere in the back of my head that they worked there, but their names, forget it. I should say at this point that at no time did the company ever employ more than 70 people at one time. I was lucky that there was one person in the company who knew my secret and was used to me wheeling up to them with the question, “Who is …… and where do I find them….?” To make it worse, most of them were technically my staff. They were people that I emailed daily, passed by daily, spoke to on the phone daily, some I even spoke to face to face once or twice a week and right now, I can only name two, first names only. I learned several tricks that hid my missing memory, the first was to hide in my office, the second to communicate with them from there and the third was to speed everywhere that I could. If they stopped me as a sped past because they wanting time off, or for me to check their commission or something of that nature, every conversation ended with “email me”, that way I knew who they were.

Adam is now also totally used to it. Yes, I do know his name and who he is, but he knows without a doubt that I don’t know anyone else’s. We have thousands of conversations weekly about what or should I say who is on TV. No, I don’t mean their real names, I’m talking about character names in shows I have been watching for years, like “Eastenders”. To me, they seem to all be called “You know………… who-do-you-flip” or “What’s their name” and not one has a real name, I could name a single member of the cast. Oddly, though I may forget their names but at that moment I might just be able to tell you who they are married to or who their kids are in the story, two minutes later they will go to. At first I did just think that I had a really bad memory when it came to names and faces. No matter how famous or how well I had known them, it was no guarantee to my knowing who they were. I had learned over the years to deal with all the other odd things that my body did and to brush things away as just my mad body, but inside I worried. Eventually, the truth had to be admitted, it was getting worse and yes I could cover much of it, but I knew there was something really wrong. With my diagnosis of Fibro followed by the news of PRMS supplied me with the reason, but it didn’t stop it getting worse and to be honest, it is one of the joys of being housebound, I don’t even have to try outside of those conversations about the TV.

The second big question that I hate, well it’s thanks directly to my health. “How are you?”. I would put money on it that there isn’t a single person who has a chronic illness, who doesn’t hate that question. You know the second that you hear it that there are two ways to answer and it depends on the person who asks it. If it’s someone who really cares about you or loves you or your doctor, well they actually do want to know. Anyone else on the planet doesn’t give a damn about the detail, just if you’re alive or not. As they can see or hear you, they don’t even really want an answer at all. 99.9 percent of the time politeness is a wonderful thing, the politeness of asking how someone who is never going to be well again, is irritating to say the least. I have been tempted so many times when someone who I knew didn’t actually give a damn about my health has asked “How are you?”, to give them a full and vivid picture. I am sure that I am not the only person who has sat there with the answer from hell swimming around in their heads, every word of it wearing little horns and coloured red, or to answer it with just one word “dying”. The same politeness that asked it has stopped me from answering.

It is a question that I actually normally avoid asking anyone now. When I do, it’s because I want the answer, not just OK. The longer you are ill and the more people you get to know who are not well themselves, or know you because of your health has brought a new way of answering it into my life. I now start with a basic statement of how I am, “tired…”, “not great…”, “in pain….” or something along those lines followed by “…but OK”. The open is then there if they want it to take it further or close it down quickly. “How are you?” is a question, it’s not a greeting nor is it just a filler as something to say. If I ask it, I mean it. I want to know, maybe not the full details in its fullest goriest, colours, but I am asking about their well-being because I care, not because I can’t think of anything to say.

Our health changes everything, probably the truest statement there is. It fills our lives with questions that can’t be answered by anyone, not even ourselves. There isn’t a day when another question doesn’t appear that sends me off searching for something that will if not answer it, put my mind at rest. So the third question that I hate is the ones that can’t be answered. I grow up believing that everything had an answer. When my daughter was growing up, there wasn’t a question she asked that wasn’t answered in full. If she managed to come up with something that I didn’t know the answer to or needed pictures to assist my answer, well we consulted the encyclopedia. These days, it’s my questions that send me into the modern replacement. If there is one thing I have learned about my health it is, it will always keep coming up with questions that not even the power of the internet can answer, and I hate that. Medicine started back in ancient times and in every corner of the world. Millions upon millions have studied the human body and mind, dissected it, mapped it and scanned it, so how can it be there are still no answers. Sometimes I can’t help wondering if it is just a simple case of not the answer that is missing, but the right question not being asked.

Please read my blog from 2 years ago – 03/08/2013 – The news starts well

It seems like a really long time since I filled in and I completed the endless pack filled with questions about my health, in the hope I guess that they might find a way of making me work again, believe me something I would do happily as that would mean I had my health back. I sent off all the paperwork and made myself ready for…..